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Psoriasis Club › HealthHealth Boards › Prescribed Treatments For Psoriasis v
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About to start Fumaderm

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About to start Fumaderm
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
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Posts: 26,589
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Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#81
Sat-10-03-2018, 18:32 PM
I understand your change of mind. I’m beginning to suspect that you may be one of the few where the fumarates don’t work. Confused
It is unlikely, because fumarates are a part of the energy cycle of your cells, but it does happen.
Still the hope remains. Just continue until the meeting with the derm.
A bit sad that you cannot go higher anymore, over here we had quite some people who started to react with an 8x120 dose, or even higher, I know them personally.

I will hope with you that it will still do something for you
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#82
Sat-10-03-2018, 19:55 PM
(Sat-10-03-2018, 15:26 PM)arsenalfan13 Wrote: Just thought I'd pop in with an update. Been on maximum dose for a couple weeks now and still no improvement. My psoriasis is worse if anything with a couple new spots appearing.

So yeah it's not looking good. I'll continue to take them until I see my dermatologist next as the tablets aren't causing me any bother whatsoever side effect wise, and I guess there is still a chance they may start to work. I'm just at the point now where I'm hoping (but not really believing) but not expecting.

Yes it certainly is looking doubtful unfortunately....but I will keep my fingers crossed ....on the plus side you haven't had to endure the side effects for no gain ..
I hope it will kick in but if not I hope you get something that will work for you soon Thumb
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arsenalfan13 Offline Author
Member


Posts: 57
Threads: 6
Joined: Aug 2016
Gender: Male
Location: UK
Treatment: Betnovate, Dovobet
#83
Fri-06-04-2018, 11:18 AM
So just thought I'd pop in with what will probably be my final update on Skilarence. Been on it for 3 months now and have been on the maximum dose for 5 weeks and there hasn't been any improvement, not even slightly. So Fumaderm unfortunately hasn't worked for me. I guess not having any side effects whatsoever turned out to be a bad thing and was a sign it wasn't being absorbed by my body in the best way for it to work?

Anyway, can't pretend I'm not gutted cause it definitely seems like the best drug for psoriasis around if it works but got to keep positive. Got my next dermatology appointment on the 17th and think I'll need to try one more drug at this tier before I'm considered for a biologic. Think I'll give cyclosporine a go as the results seem good even if it isn't a drug you can be on too long. But perhaps by the time it comes to stop taking it there will be something new on the market I can try.
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
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Posts: 67,201
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Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#84
Fri-06-04-2018, 11:45 AM
(Fri-06-04-2018, 11:18 AM)arsenalfan13 Wrote: So just thought I'd pop in with what will probably be my final update on Skilarence. Been on it for 3 months now and have been on the maximum dose for 5 weeks and there hasn't been any improvement, not even slightly. So Fumaderm unfortunately hasn't worked for me. I guess not having any side effects whatsoever turned out to be a bad thing and was a sign it wasn't being absorbed by my body in the best way for it to work?

Anyway, can't pretend I'm not gutted cause it definitely seems like the best drug for psoriasis around if it works but got to keep positive. Got my next dermatology appointment on the 17th and think I'll need to try one more drug at this tier before I'm considered for a biologic. Think I'll give cyclosporine a go as the results seem good even if it isn't a drug you can be on too long. But perhaps by the time it comes to stop taking it there will be something new on the market I can try.

That's a shame, but it just goes to show how difficult it is to find the right treatment for each person.

As for DMF (Fumaderm / Skilarence) being the "best for psoriasis". My opinion is there is No best. Some like me will say Bio's are the best, and some will say diet is the best. It's all about finding what works for us as individuals as there is no one suit fits all as far as psoriasis is concerned.

Good luck with your next try, and don't hesitate to start a new thread about your new journey if you wish.

Thumb
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#85
Fri-06-04-2018, 12:09 PM
(Fri-06-04-2018, 11:18 AM)arsenalfan13 Wrote: So just thought I'd pop in with what will probably be my final update on Skilarence. Been on it for 3 months now and have been on the maximum dose for 5 weeks and there hasn't been any improvement, not even slightly. So Fumaderm unfortunately hasn't worked for me. I guess not having any side effects whatsoever turned out to be a bad thing and was a sign it wasn't being absorbed by my body in the best way for it to work?

Anyway, can't pretend I'm not gutted cause it definitely seems like the best drug for psoriasis around if it works but got to keep positive. Got my next dermatology appointment on the 17th and think I'll need to try one more drug at this tier before I'm considered for a biologic. Think I'll give cyclosporine a go as the results seem good even if it isn't a drug you can be on too long. But perhaps by the time it comes to stop taking it there will be something new on the market I can try.

That’s a shame I had high hopes for you and despite no side effects I was hopeful you would see an improvement in your skin, you have given it a good try and unfortunately it didn’t work out. Let’s hope the next treatment will give you the longed for clearance.
Do keep us informed of your decision and let us know how it works for you
Good luck on the 17th maybe you will get a bio  Thumb
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Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#86
Fri-06-04-2018, 12:37 PM
Fred is correct, Arsenalfan. You have to keep trying. It's not as if there is a stamp on you telling the dermatologist what med to prescribe. At least you have many choices and hopefully the duds are behind you.

Cheers
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Caroline Offline
You must hurry if you ever want to catch a chicken...
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Posts: 26,589
Threads: 113
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Location: In between the tulips
Psoriasis Score: 3
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PQOLS: 4
Treatment: Got back to DMF slow release
#87
Fri-06-04-2018, 12:42 PM
(Fri-06-04-2018, 11:18 AM)arsenalfan13 Wrote: So just thought I'd pop in with what will probably be my final update on Skilarence. Been on it for 3 months now and have been on the maximum dose for 5 weeks and there hasn't been any improvement, not even slightly. So Fumaderm unfortunately hasn't worked for me. I guess not having any side effects whatsoever turned out to be a bad thing and was a sign it wasn't being absorbed by my body in the best way for it to work?

Anyway, can't pretend I'm not gutted cause it definitely seems like the best drug for psoriasis around if it works but got to keep positive. Got my next dermatology appointment on the 17th and think I'll need to try one more drug at this tier before I'm considered for a biologic. Think I'll give cyclosporine a go as the results seem good even if it isn't a drug you can be on too long. But perhaps by the time it comes to stop taking it there will be something new on the market I can try.

Very sad that it doesn't work. It may be that your body does not see it in the way others see it.
Can you perhaps ask to increase? Is there a reason for them not to increase?

Too bad you cannot use Psorinovo, that has no max dose. DMF anyway has no max dose. Over here there are many of Psorinovo users that had to go to 8x120 (or even higher) before it started working. Then often they can lower the dose over a while, although I know there are patients still on a higher dose.

Indeed I agree it is one of the best medications up to now, if.... it works for you. It is non toxic, has a proven record of at least 35 years, the only thing you have to keep an eye on are the lymphocytes. And the advantage is that it "moderates" the cells, where biologicals totally block receptors on cells.

But if it doesn't work for you, then you will have to start searching for a next step. There are many possibilities.
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Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#88
Sat-07-04-2018, 04:07 AM
A couple of points, Caroline. One is that there is redundancy in the immune system. Perhaps af has strong compensatory mechanisms for the immunomodulation of DMF. That could explain why it does nothing for him. Another point is that the use of DMF in the UK is not as enlightened as it is in the Netherlands. A dermatologist would not prescribe outside the guidelines. At least af is in the system. The best he can do is move on, hopefully to something better.

Cheers
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Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,589
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#89
Sat-07-04-2018, 19:09 PM
Indeed Bill, but the Netherlands is not as enlightened as your think. You really need an enlightened dermatologist, there are not much of them. And it only works with Psorinovo to go above 6x120mg. The new Skilarence which basically is only DMF so could also be presricbed higher, but the derm will not do that as the leaflet says that 6x120 is the max dose. That is because Almiral did not do extensive reseach. They are just basing on the common standard Europe which is Fumaderm. They are not innovative, otherwise they would have made a slow release version also, but even telling them that they should add that, does not help.
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,201
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#90
Sat-07-04-2018, 20:45 PM
Don't get carried away DMF Gang. Whistle
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